Two years ago, the UN committee on the rights of persons with disabilities called on the UK to recognise disabled people’s right to live independently, and said it was “going backwards” on independent living.

It warned that disabled people were “not able to choose where to live, with whom to live and how to live… [they] are still facing the risk of institutionalisation and not being able to live within the community.”

Now the Equality and Human Rights Commission (EHRC) says there is “growing evidence of regression in relation to the right of disabled people to live independently as part of their communities”.

It has produced a working paper with six “key elements” that together could “incorporate the right to independent living into domestic law”.

These six elements include a new duty on public bodies like local councils to aim to meet the requirements of article 19; a legal presumption that accommodation should be provided in the community, with care and support to enable “community or home living”; and a ban on building new “institutional” accommodation.

The commission has been working on its plans since at least November 2017 and is still “refining” its proposals.

As part of its development of the working paper, it has been consulting members of the Independent Living Strategy Group (ILSG)*.

Baroness [Jane] Campbell, ILSG’s chair, said: “The ILSG welcomes the paper, which we helped to develop over the past 18 months, in one of our many attempts to strengthen disabled people’s right to independent living.

“The EHRC and the ILSG will continue to collaborate on a number of ways to bring about a statutory right to independent living and [want] to work with anyone to this end.”

Dr Miro Griffiths (pictured, centre), a researcher, adviser and campaigner on disability rights and a member of EHRC’s disability advisory committee (DAC), said: “As the EHRC has noted in recent years, there are widespread concerns that disabled people’s right to independent living is being eroded.”

He said the commission’s proposals would build on the UN committee’s recommendations and “go some way to protect independent living against the ever-changing political, economic, and social objectives of the state”.

But he said any changes would also have to ensure that guidance and interpretation of the new laws by policy-makers would be developed “in line with the ideas, values, and aspirations of the disabled people’s movement”.

He said he was supportive of the direction of the work so far, but that it was essential that the commission “continues to take guidance from the DAC, and others, as the proposals develop”.

Becki Meakin, general manager of Shaping Our Lives (SOL), who has been involved in the ILSG discussions, said it was “very disappointing that disabled people’s right to live in the community, a right that most people would not question, has to be protected by legal measures”.

She said SOL supported the EHRC proposals, but she warned that disabled people had found it “extremely difficult” to use other legislation, such as the Care Act, to defend their rights.

She said: “A key problem is that disabled people will often not have access to legal aid and not have sufficient money to hire the necessary legal support to challenge a local authority in court.”

She said any new laws would need to be accompanied by investment in disabled people’s organisations so they could advocate for disabled people relying on the new legislation, and support for disabled people so they have “the best possible chance of defending their right to choice and control on where and how they want to live”.

Meakin said: “Shaping Our Lives has been raising awareness of the crisis of user-led organisations and the many closures of local groups that provide a collective voice for disabled people and those from diverse communities.

“Without a strong network of local user-led organisations, disabled people may still experience too many barriers to independent living and have no means to defending it.”

Professor Peter Beresford, co-chair of SOL, said there also needed to be more attention paid in the proposals to the diversity of disabled people, particularly mental health survivors.

He said: “Given that more and more survivors are being especially penalised by welfare reform and coming under the control and compulsory provisions of mental health legislation, it would be good if more attention could be paid to this highly problematic and contentious area.

“This especially given that we know that this discriminates particularly against some black and minority ethnic groups.”

He suggested a wider consultation by EHRC with disabled people and their organisations, including SOL.

Sue Bott, head of policy and research for Disability Rights UK, said: “Ideally we would like to see the rights enshrined in the UNCRPD brought into domestic legislation but failing that, the measures put forward by the EHRC would go a long way towards realising our right to independent living.”

She said the proposals “would pretty much do it in term of a right to independent living, but the wording in UNCRPD article 19 is more explicit in the scope of what we need.

“As we have seen with the public sector equality duty, there is always a doubt and room for interpretation in a public sector duty.”

And she added: “It’s not just about resources – many community solutions are in fact cheaper.

“It’s about a change in attitudes and a recognition that disabled people should have the same rights as everyone else.”

*The Independent Living Strategy Group works to protect and promote disabled people’s rights to independent living in England. Its members include disabled people who were part of the independent living movement during the 1970s and in later years, as well as younger activists, other individuals and organisations concerned with independent living.

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